Happy Birthday, Maggie Jean!

Two years ago I was anxiously awaiting the arrival of little Maggie Jean. She was estimated to be 10 lbs (!!!) so we scheduled a c-section for August 15 (her due date). On Friday August 8 I went to the doctor in the morning and he said he wanted me to have her that weekend! We didn't have anything prepared at the house -- David was in the process of staying elsewhere until I moved, but we were also packing my things so that roommates could move in with him once I left (so we didn't pay to break the lease since he stayed in PA for the next year). We didn't have any space set up for Maggie, I hadn't even finished payroll for the week at work! I just remember that being such a whirlwind of a day. So I went to work, luckily it was slow - the workers were all "laid off" for the week as production was slow, none of the bosses were in, just me and a couple of the guys. I finished payroll and typed up a manual for whoever was going to take my place, paid and filed the last of the bills I could do, called our contractors and emailed work sites to let them know I would no longer be there after today, and said my goodbyes. I went to the grocery store on my way home and got some last minute things I thought I would need and went home to organize and try to get as ready as one can possibly be to have a baby!

Saturday went by fast, then Sunday came. On Sunday we went to the hospital prepared to meet our little girl that day. The doctors checked me in (if you live in ERIE, I truly suggest going to UPMC, it's beautiful!), and the waiting game began. They gave me my first dose of cytotec (to start labor basically) and it didn't do anything but cause contractions. I had contractions all night, and about 4am they gave me a second dose. Maggie was nowhere to be seen around 8am, so the doctors (the same who said to have her this weekend) gave me two options, I could go home and wait it out or have a csection later that day. I was moving in two weeks so we opted for that day. after 7 hours of waiting in a tiny recovery room with my mom and David, the doctors finally took me back.


I had a spinal block, which was terrifying. But as soon as they laid me back, we were ready to go. David came in and literally it went like this:
D: "hey, how are you?"
Me: "scared, this is scary. how are you?"
D: "I'm ok. excited. nervous..."
*Cue Maggie crying*
It went SO FAST. David went and scooped her up, showed her to me, then they were back out to our room (I hear D wouldn't let my mom hold Maggie because he just kept hugging her and taking pictures lol he was pretty excited)





Things got interesting here. They had a shift change in the middle of my 5 minute surgery. WHAT? So the count got off on some needles.... so they had to call radiology to make sure they didn't leave one in me...WHAT?! So I was in there for about 40 minutes when a nurse called to make sure all was ok, she noticed I wasn't with my family and didn't want them to freak out. The doctor went and sat down and turned on Pandora for me to listen to and the sweet little nurse just talked with me to keep me from being bummed out that my kid was already 1.5 hours old when I finally got to see her! Anyways, They did xrays twice and I finally got to go see my girl and all was well in the world.
Born at 2pm, this 6lb (not 10!!) 21 in long beautiful girl would forever change our lives.

We lived in PA for 2 weeks, then moved to MS. It has been the most exciting, tiring, love-filled, stressful two years of my life. But I wouldn't trade her for anything in the world.
Happy Birthday, my sweet girl.


    





*Pretty much this exactly

Maggie's Godmother, Dad, Me, and My Brother - Her Godfather at her baptism.

whatevs

11 pm on a Friday night. My kid has been asleep for a couple hours, what seems like the only person I talk to is MIA (but probably sleeping), and I just decided to list my wedding ring for sale.

Talk about a fast week. I don't even remember Monday, I thought today was only Wednesday when I woke up. I feel like I'm just waiting for my life to begin. Like I'm stuck in this same lonely boring cycle waiting for something to happen. I am only talking about myself here. I know I have Maggie. I know she is growing and excited and we live every single day through the eyes of her two year old adventurous mind. She does keep me on my toes.

But for myself, where does my life start? My life is going, now, yes. But for whatever reason I feel so behind. I will be starting grad school in the fall (though you'd never be able to tell from the grammar of this post), my girl friends and I are planning a trip to Hawaii for our 30th birthdays, and somehow all the guys in my life are making me insane in all the different ways men make women insane. So from the sounds of it, I am right where a 28 year old should be. But it just seems like something is missing. I can speculate. But to be honest I don't completely know what it is. I don't completely know because I don't completely know what I want with my life. I want a family, I want a good job. I want happiness. I think that's what's missing.

This morning every single stupid meme on the internet was just hilarious to me. I was laughing until I was crying. But I felt empty inside. It's such a strange, weird feeling to laugh but feel...dead. I don't normally feel this way, but today I did. I have this literal ache in my soul for missing a person I never intended to miss, I had to ask my Ex about something which just opened a new can of worms, and I listed my wedding ring for sale. Today I hit every single emotion in the book. And I don't have anyone to talk to about it. (Cue where I miss having a significant other or best friend who is on my side).

At the end of the night all I can hope for is that I can find happiness away from relationships for the time being. That I can learn to be patient when I want nothing more than to curl up with someone and laugh at this ridiculous show I'm watching. That I will find and rekindle good friendships with good women. That at a young age of 28, I won't feel like my life is at a stand still, a never ending cycle of boredom. That I will just believe that in the right timing, everything will fall together exactly how it should.

As for the ring, I have mixed emotions. It's a beautiful ring, but I will never wear it again. So, I hope it sells fast, and that will be the last piece of that part of my life to go.

I know this is sort of all over the place. I guess I used this as my journal tonight. I should probably start writing one of those again. I'm sure that will never happen.

Sweet dreams, blogosphere, Thanks for listening.

(p.s. if you're interested in seeing (or buying!) the ring: https://www.etsy.com/listing/469189227/vintage-white-gold-diamond-ring-size-9 )

milestones

The last year has been full of so many ups and downs. My faith has strengthened and wavered, my friendships have come and gone, my dating life has been a wreck, and my sweet girl is now almost 2 years old (this might be the hardest pill to swallow). If you had told me this time last year (and even still some days now) that I would make it through, that I will be okay-- I may have rolled my eyes and said "yeah, okay."

But yesterday I put air in my tires on my own, for the first time. I killed an actually pretty big spider hanging in my living room. I put money into my savings account. Paid all sorts of bills I never even thought of 10 years ago (I now owe only 1/4 of what I paid for my car!). And at the end of the night I tucked my girl into bed, read her a story, said our prayers, and we both went to sleep knowing that we are being taken care of. That we have a good car, a roof over our heads, I can work my job and send her to a wonderful sitter, and if she wants the Minnie mouse toy at the store- I can actually afford to buy it for her.

These are the little unnoticed milestones in the rebuilding of a life. I will admit, there are days when I can't see a light at the end of any of the tunnels, but when I really stop to think-- I had a major life setback, that wasn't a product of my own choices -- we are doing just fine. Given, we are doing this okay because we have wonderful, supportive, and helpful family and friends. I wouldn't have made it through the last year without them, and that's a fact.

At 28 years old I truly had a different vision for my life. But when I think about what that vision was, and while I don't necessarily condone divorce, I see so clearly that D and I were on different paths in life. I will never regret my first marriage, but I can only hope that everyone involved in the terrible destruction that it was will learn and grow abundantly from it.

Today I am meeting with Profit/Nonprofit Administration degree program department head to discuss starting my Master's degree in January. This is definitely a 180 from the degree I so passionately wanted to pursue when I started college. I began in Biology, Marine biology (will always be the first love of my life). When I met D, we decided to move to PA which happens to be nowhere near an ocean (yes, I know there is Lake Erie, but that's not the same). So I switched to Earth Science, which will stay a constant love and interest until I die. This is where having children and being on your own changes everything-- I know some people will say to never give up on your dreams, but Maggie is part of my life's dreams, so I am choosing her over underwater cave diving, standing on the edge of volcanoes, and discovering if the Megalodon shark really does still exist (I'm not convinced they don't). I have always had 3 very different things I have wanted to do in life- Marine/Earth sciences, wedding planning/ owning a hall, and helping others- open a sort of shelter, get on your feet, cater to the under-served people of our city country. So today I meet with these advisers to take the first step in the only one of those three jobs that (seems to me) will give my life some meaning. Something worth while. A legacy to leave behind, a place and a hope that people can believe in. A Dream Center (See this link if you are interested in seeing where my mindset is with this place). I believe there is so much more we as people can do for others, and I believe we need to do it, no questions asked.

One year ago I knew I would make it out, I would find the other side of the grief, the loss, the depression that was so desperately trying to make me sink under. I was more hopeful in the midst of the pain than I am some days now. But now I know, without a doubt, that my life is on the right track for me and my girl. As I take this time to spend it bettering myself and in turn - our life, just getting to know who she is becoming - and getting to know this new me in the mix, I am confident that all the gaps will be filled in with the people and things that are supposed to fill them. I am sure that even when I don't speak to Him for days at a time, or some weeks only to tell Him I'm angry- that God is weaving together our perfect plan. I praised Him through the entire wild and crazy storm of the last 3 years, I need to remember to keep praising Him now, while everything is slowly but surely falling back into place.

So this week marks so many milestones in my life, small and big. I hope this date won't forever be ingrained in my memory as the day I got divorced, and I'm sure it won't. But hopefully I can remember it from now on as the day I decided to change my life from what was, to what can be.

Que sera, sera

"There are days I want better for us, and days I'm content. There are days I want to be alone, and days I want to spend every minute with her. There are days I hope she will get to know a complete family unit, and days that the thought scares me- for myself. Motherhood is messy. It's scary. And it's always changing. Being unsure isn't a sign of weakness though, I think it's a sign of strength. Of knowing when to walk away, or when something is good enough to take the chance. Of putting her well being before mine, and making sure she never questions how much I love her" (can you guys just look at those cute little pudgy fingers of hers, those little hands that get into absolutely every. single. thing. she can touch. I wish time could slow down just for this year). 

I've sat here for literally 6 hours today trying to think of what to write here, and there have just been 18 million thoughts in my head, but none of them seem good enough to warrant telling strangers and friends about. But what I think I will do is go off of my personal instagram post from this morning. 

Not only is motherhood a messy, scary, constantly changing affair-- it can be quite terrifying when doing it on your own. The days I am content are of course, the easiest, but they are few and far between. The days I strive to make a better life for my girl are definitely the most stressful, but also the most surreal. I know I have it better than so many other people, but I also know that deep in my heart of hearts I want this little girl to experience a life so full of love that she will never question if her parents considered her in their divorce. Does that make sense? It really takes a good soul to join the ranks of parenthood- especially when joining those ranks as a step parent. It takes someone who truly knows what that means to step into a roll to do life along side of another parent. To get along with the other families and parents involved, to put the kid(s) first when it's supposed to be about them, and to support the parent when the ex is driving them insane. 

While I haven't quite found this person yet, I stay hopeful. I know that not all dreams come true, but I also know that God grants us the desires of our hearts, as long as they are in his will. And I just can't believe that a loving God would take me on the road I have been on, for this to not be part of His will. 

Lately I really took all the thoughts I had about my life, and threw them out the window. I met a wonderful man, who was every characteristic I thought I wanted in my life, and broke up with him because I realized he wasn't what I needed in my life. I've very recently let myself get all carried away in the feelings game for a guy, and I would be happy to do life with him, but there are so many different factors that said life seems to be putting in the way of that being a real thing. And if that means we just stay friends, then at least we will have that. And for right now, I am okay with that. Que sera, sera (Whatever will be, will be). 

This post could end here, but I am going to address a second issue that sort of plays into the one of finding the right person for you and your family. Ladies, when a man quits pursuing you, let him go. Learn your worth. Appreciate your worth and find someone who values that. Who even if you're being silly, or in a goofy mood, won't call you stupid for it, but will grin and bare your quirks. If you have kids, someone who will be okay with you taking time out of your evening to sit with your child and read bedtime stories-- or even better yet, who will read them with you. Someone who will sit with you when the entire world feels like it's crashing in, take your hand, and be on your side through it all. Someone who truly thinks you are beautiful and that you think the same of. Who uses their actions to show you they care, not just their words. Who picks your mind- that you can have silly, serious, political, philosophical and just plain weird conversations with. Find someone who the friendship is so strong that if the love fades, there will still be years of friendship left. Find the person who pursues you, who makes you sane and insane at the same time, who makes you want to be wild and innocent at the same time. Find someone who compliments you, who grows you, challenges you, and loves you just as you are. 

But even more than all of the "wise" words I can impart on you, I say this: never be afraid to take the chance. If it is what you truly believe to be right for you, don't let the opportunities, relationships, or adventures pass you by. Life is worth the living, and the scary, messy, unsure roads only make us stronger.

Que sera, sera.

Monday

I had a really good blog written out, but then it got to this point where the next paragraph was either going to be super blunt, or super whiny. So away went the whole thing and now you get this:

When people are in need, and there is nothing you can do to truly help, the best thing you can do for them is pray. Whether or not they believe in the same God you do, or at all, sending "good vibes" doesn't mean anything, because generally, people don't even keep the person in their thoughts. Prayer is intentional. It is committing to sit down and think about and pray for this person in their trying time. Being intentional is a great sign of love for other people. And loving other people is one of our commandments as Christians.

God has brought me down a road I never in a million years saw coming. But through that, I have been able to bless more people more often- both in my works and my money. And I have learned, as I hope others do too, that God is doing far more behind the scenes than I even realize. I will never know the amount of fighting for me that has gone on, even when I don't feel like He remembers me at all.

I encourage each of you to find some way to help out, to volunteer time or money to a cause. It doesn't have to be a big production. It could simply be a friend who needs birthday or christmas gifts for their kids, someone who needs help with some groceries, a ride to the doctor's office, a cup of coffee and conversation, or even just a hug.

We never know what someone is going through until we reach out and ask. That person who seems so happy might be going through the hardest time of their life. And the hardship could be of their own doing, or someone else's against them, but no matter what- it is a hardship, and as fellow humans, friends, believers- we need to carry those burdens together, with each other and with Christ.

8/8

It's amazing how quickly one comment can make you reevaluate everything you thought to be right. But what's more amazing is how fickle the human mind is and can be. I will be the first to admit that I daily struggle with my faith, what I believe is right and wrong- not my moral compass, but how I don't see smoking or drinking as a sin necessarily (but when it becomes an addiction is a very real illness), or how I too think like so many millennials (and whatever my generation is called) and don't see it as a problem to not be completely involved in a church. And other questions of life.

So a couple weeks ago when a blast from my past said something along the lines of "maybe you need someone who sees the world a little differently" it really made me question everything. And this week, when a very close friend and great woman of God AGREED with that statement, and said that there's a little leeway for everything, my mind was all of a sudden blown.

I have been so focused on living this by the book life, but I have only gotten myself into situations and relationships that I don't love. I have prayed and trusted and felt led into these places, but maybe there was more to them that didn't get nurtured or understood.

I believe God created us to be people of wander. Of chances. Of second, third and fourth chances. Of Growth. Of change. Of doing. Of creating. Of life.

The definition of life is: The condition that distinguishes animals and plants from inorganic matter, including the capacity for growth, reproduction, functional activity, and continual change preceding death.

 So what do you do when the right situation comes along, but 2/8 of the things you thought should be one way, aren't? Do you overlook them? Do you compromise? Do you say "well, it's the perfect job in the worst town" or "Well, he's the unicorn I've wanted in every other way" or do you simply say "it's not the full 8/8."


 I have a vision for my life. A goal. I have things I want to accomplish, I have completely attainable dreams. But with those dreams, there have to be people in your life who will push you to accomplish those things. There has to be the job who is understanding and accommodating to the fact that you need to work, but also have a family, or other responsibilities, as well as a drive to better your life. There has to be those family members, significant others, friends, who stand behind you and encourage you every step of the way. I have these things, for the most part. But I also have better opportunities and relationships and friendships waiting out there in the world.

So when do you look at everything you thought to be right and true and good, and say it's time for change, and take the plunge? How much courage does it take? How do you know it's the "right" thing, or do you just sort of say "YOLO" and go for it? (I'm inclined to go the yolo* route these days).
 I don't know the right answer here, but I do know that life holds so much more than we think it does. There's an entire world out there that is ours for the discovering, if we'll only take the adventure.


*YOLO- You Only Live Once for those of you not hip to the lingo days**
** yolo itself is years old, that's where my knowledge ends. "It's been lit, fam" (I believe that's a legit sentence hahaha ;)

run down of PKU

So I haven't really written on Maggie's condition. So that is what we will learn about today.

Maggie was born with a rare metabolic disorder called Phenylketonuria, or PKU for short. The definition of PKU from the National PKU website is this: 

"Phenylketonuria (PKU) is a rare, inherited metabolic disorder that is characterized by the inability of the body to utilize the essential amino acid, phenylalanine (Phe). Amino acids, usually obtained from the food we eat, are the building blocks for body proteins. PKU is caused by a deficiency of the liver produced enzyme phenylalanine hydroxylase (PAH).

This enzyme normally converts Phe to another amino acid, tyrosine. Without this enzyme, Phe accumulates in the blood and body tissues. Excess Phe is toxic to the central nervous system and causes the severe problems normally associated with PKU. When left untreated, PKU patients who consume too much Phe are at risk of severe neurological complications, including IQ loss, memory loss, concentration problems, mood disorders, and in some cases, severe mental retardation.

Damage done is irreversible so early detection is crucial. When treatment is begun early (within the first few weeks of life) and rigorously adhered to, affected children can expect normal development and a normal life span. PKU can be treated by a diet low in phenylalanine and high in tyrosine. While there is no cure, in recent years a few drug products have become available that can be used in limited cases to mitigate the effects of the disorder. Other therapies currently under investigation include an injectable form of PAH and gene therapy."

People with PKU have to drink a daily formula that is the make up of protein, but doesn't have the amino acid phenylalanine. We call it her milk. She will have to drink it every day for the rest of her life. 4 cans (the size of regular Similac or Enfamil cans) cost about $700. She currently needs around 10 cans a month. The cost and the amount needed only increase as she gets older.  There are currently 16 states with little or no provisions for metabolic disorders, mainly PKU (I am currently putting a packet together to send to our congressmen to get this changed). Most states, including Mississippi (who has zero provisions for PKU), will allow coverage of formula through the state healthcare (medicaid) for children- if you fight with them enough. Most states give some sort of tax break or monetary help for the everyday foods. Most all of her foods are only available through online stores and some of the costs are as follows:

1 box of 30 individual snack bags tortilla chip bags: $30
8 oz Pea-not butter: $8.49
2lb bag of baking mix (for pancakes she loves): $12.79
(16) frozen veggie meatballs: $20.49
12 cranberry pumpkin cookies : $12.49
(8) mini plain bagels: $12.49
(4) Veggie burgers: $11.49
Pasta: $10/box (like we get for $1 at Wal-Mart)
Cereal: $7/box
Rice: $9/box
Cake mix: $6/box

She is allowed only 7g of protein a day. In comparison, 1/2 cup of peas has about 4g of protein. So even with her fruits and veggies there are some she can't have. 

So the question comes up "Why can't she just have a vegetarian/vegan diet?" Good question! Phenylalanine (PHE) is an amino acid that is contained within so many foods. Bananas have zero protein, but high PHE. High protein foods such as: meat, fish, poultry, eggs, cheese, milk, dried beans, and peas are avoided along with wheats and flours.  If she were to eat a normal diet that included these foods, severe and irreversible brain damage would be certain. 

"Phenylketonuria (PKU) is characterized by elevated blood levels of the amino acid phenylalanine (Phe), which is mainly obtained from eating proteins. The symptoms of PKU almost exclusively concern the brain, so how does an elevated blood Phe level affect the brain? The brain is protected by a surrounding layer called the blood brain barrier (BBB), which allows some material to cross while preventing others. The brain needs certain material to cross the BBB to allow for normal functioning. One of the raw materials the brain requires are amino acids including Phe for building brain proteins and making chemical messengers called neurotransmitters.
The way Phe and other amino acids get across the BBB and into your brain are by using transporters. This is similar to a bus (the transporter) carrying people (the amino acids) to a destination, each seat gets taken up by an amino acid and the next stop is the brain. This analogy provides a visual description of the main theory of how elevated blood Phe can affect normal functioning of the brain. Imagine that elevated blood Phe in PKU can lead to Phe taking up more seats on the bus, which may cause two things:
More Phe gets transported into the brain
Less of the other amino acids that share this bus get transported to the brain because Phe is taking up their spots!"

With PKU there is only mild (HyperPHE) and high (classicPKU). Maggie girl is, thankfully, mild. This puts her as a prime candidate for a somewhat newly FDA approved therapy drug called Kuvan. Kuvan is a type of  Sapropterin pill. "Studies have shown that taking daily pills of sapropterin Iower and stabalize blood Phe level in some people with PKU. Sapropterin is available by prescription and is meant as an additional therapy to the Iow-Phe diet. To determine if sapropterin therapy will work, the physician puts the patient on the drug tor a trial period and evaluates its effectiveness." I am so excited to start this for her, and I hope she will be a responder. If she isn't, we will wait a couple years and try it again. It isn't covered by most insurances right now, but that is also something that can be fought for and sometimes approved. But since PKU is so rare (roughly 20,000 people in the US), it's not on the radar for most insurances and states.  But when not approved, BioMarin, the owners of Kuvan, have a fund set up and help for the families to pay for it. The PKU community is so amazing in that no one wants anyone to go without. It's truly a blessing that this community is so "all for all, no man left behind". 

We will be starting her trial on Kuvan in the next month or so. She will go from having one doctors appointment every other month, to 5 in one month to monitor if it is working for her or not. So, if you're the praying type- please pray with us that she responds, and if it works, she will be able to have much more protein in her diet! (yes & amen!)